Chinese researcher He Jiankui of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her… Read More »Press Statement: Monstrous Gene Editing Experiment
I am grateful to Prof. Savulescu and Dr Giubilini for taking the time and care to respond in detail to my Declaration in Support of Conscientious Objection in Health Care. I also thank Prof. Savulescu for giving me the opportunity to reply to their lengthy analysis. The authors make a series of important criticisms and observations, all of which I will face directly. The topic of freedom of conscience in medicine is both contentious and likely to become increasingly urgent in the future, so it is as well to dispel misunderstandings, clarify assertions and respond to objections as thoroughly as possible. That said, I hope I do not try the reader’s patience by discussing Giubilini and Savulescu’s objections point by point, in the order in which they raise them.
By Mackenzie Graham
On July 30, The UK’s Supreme Court ruled that there is no requirement to obtain court approval before withdrawing clinically assisted nutrition and hydration (CANH), when there is agreement between physicians and the family that this is in the best interests of the patient.
In the judgement, Lady Black writes:
“If the provisions of the MCA [Mental Capacity Act] 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court.”
Until now, requests to withdraw CANH needed to be heard by the Court of Protection to determine if withdrawing treatment was in the patient’s best interest. In addition to being emotionally difficult for families, this is a time-consuming and expensive process, and often results in the patient dying before a judgement is rendered.
I think this decision has much to be said in its favour. First, it means that when there is agreement that continued treatment is no longer in the best interests of a patient with a prolonged disorder of consciousness, these patients are no longer being ‘forced to live’ until the Court affirms that being allowed to die is in their best interests. In many cases, court decisions take months, meaning that a patient is forced to be kept alive, against their best interests and the wishes of their family. Making the decision to withdraw care from a loved one is highly distressing, and this is likely further compounded by the burden and distraction of court proceedings.
Read More »UK Supreme Court Decision Means Patients No Longer Forced to Live
By Charles Foster
(Image: tctmd.com)
There is a dizzying circularity in much medical law. Judges make legal decisions based on the judgments of rightly directed clinicians, and rightly directed clinicians make their judgments based on what they think the judges expect of them. This is intellectually unfortunate. It can also be dangerous.
There are two causes: Judges’ reluctance to interfere with the decisions of clinicians, and doctors’ fear of falling foul of the law.
In some ways judicial deference to the judgment of professionals in a discipline very different from their own is appropriate. Judges cannot be doctors. The deference is best illustrated by the famous and ubiquitous Bolam test, which is the touchstone for liability in professional negligence cases.1 A doctor will not be negligent if their action or inaction would be endorsed by a responsible body of professional opinion in the relevant specialty.
In the realm of civil litigation for alleged negligence this deference is justified. The problem arises when the deference is exported to legal arenas where it should have no place. The classic example relates to determinations of the ‘best interests’ of incapacitous patients. Something done in relation to an incapacitous patient will only be lawful if it is in that patient’s best interests.Read More »The Dangers Of Deferring To Doctors
Written by Julian Savulescu
Hypothetical Case 1: Enzyme Replacement Therapy for Gaucher’s Disease
Consider a hypothetical version of a real life disease, Gaucher’s Disease. Gaucher’s disease is an inherited disorder caused by a genetic mutation. The mutation means an enzyme– glucocerebrosidase — is not produced. A a result, glucerebrosides (fats) build up, damaging cells. This can cause bone fractures, liver enlargement, and bleeding but most importantly, brain damage. Once this has occurred it is irreversible.
Enzyme Replacement Therapy (ERT) is now available and for the purposes of this hypothetical case, the treatment offered, if given from the moment of birth, will prevent all damage (in real life current enzyme replacement treatments do prevent most symptoms, but do not affect nervous system involvement).
In our hypothetical case, a child is born to parents known to carry the mutation for Gaucher’s Disease, and prenatal testing has already confirmed that the baby is affected. ERT must be started at birth in order to prevent brain and other damage. However, the parents are Christian Scientists and refuse medical treatment. They believe prayer can cure their child’s condition.
Doctors are concerned the missing enzyme needs to be replaced before the child’s brain is damaged. They take the case to court where judges agree that therapy is in the child’s best interests.
Is addiction within or beyond our control? What turns something into an addiction? What should we do (more of) to tackle addiction? In this interview with Dr Katrien Devolder (philosophy, Oxford), Professor Richard Holton (philosophy, Cambridge) discusses these questions.
Alberto Giubilini
Wellcome Centre for Ethics and Humanities and Oxford Martin School, University of Oxford
I am writing this post on the 25th of May, as the Irish abortion referendum is taking place. However, you will probably be reading it once the results are already known. I am not going to write in support of either side of the debate here anyway. I want to write about the appropriateness (from an ethical point of view) of this referendum itself. I want to suggest that a referendum is not the appropriate way to solve the dispute at stake.
Irish people have been asked whether they wanted to repeal the Eight Amendment of the Irish Constitution, which gives foetuses and pregnant women an “equal right to life”. It is commonly assumed that the Eight Amendment was preventing the Irish Government from legalizing abortion, except in extreme and very rare circumstances in which abortion is necessary to save the life of a pregnant woman. If the majority of Irish people votes “yes”, abortion can become legal in the country. If the majority votes “no”, abortion will remain a crime in the country, with the exception of a few extreme and very rare circumstances. More specifically, voting “no” means voting in favour of the idea that in Ireland a foetus does have a right to life equal to the right to life of the woman. Voting “yes” means voting in favour of the idea that in Ireland the foetus does not have a right to life comparable to the right to life of a woman; in other words, that it can be considered merely as part of the woman’s body for the purpose of attributing it a right to life (though not necessarily for other purposes), and therefore something that a woman can permissibly decide not to keep alive as a matter of bodily autonomy or, in many cases, and depending on what definition of “health” we adopt, as a matter of basic healthcare.
By Jonathan Pugh
The number of individuals suffering with dementia is steadily increasing; as such, the moral issues raised by the neurodegenerative diseases that bring about the symptoms typifying dementia are of pressing practical concern. In this context, Richard Holton’s topic for the first of his three 2018 Uehiro lectures (on the theme “Illness and the Social Self”) is a timely one: What are the ethical implications of the progressive and pervasive loss of memory that is a central feature of dementia?
I shall be blogging a synopsis of each lecture in the series on the Practical Ethics blog – You can find a recording of the lecture here
By Mackenzie Graham
Crosspost from The Conversation. Click here to read the full article.
The development of accessible treatment options for pregnant women is a significant public health issue. Yet, very few medications are approved for use during pregnancy. Most drug labels have little data to inform prescribing decisions. This means that most medicines taken during pregnancy are used without data to guide safe and effective dosing.
The United States Food and Drug Administration recently published draft ethical guidelines for how and when to include pregnant women in drug development clinical trials. These guidelines call for “the judicious inclusion of pregnant women in clinical trials and careful attention to potential foetal risk”. The guidelines also distinguish between risks that are related to the research and those that are not, and the appropriate level of risk to which a foetus might be exposed.Read More »Why It’s Important to Test Drugs on Pregnant Women
By Lauren Notini and Brian D. Earp
*Note: a condensed version of this article titled “Iceland’s Proposed Circumcision Ban” is being cross-published at Pursuit.
For a small country, Iceland has had a big impact on global media coverage recently, following its proposed ban on male circumcision before an age of consent.
Iceland’s proposed legislation seeks to criminalise circumcision on male minors that is unnecessary “for health reasons,” stating individuals who remove “part or all of the sexual organs shall be imprisoned for up to 6 years.”
The bill claims circumcision violates children’s rights to “express their views on the issues [concerning them]” and “protection against traditions that are harmful.”
According to bill spokesperson Silja Dögg Gunnarsdóttir, a key reason for the bill is that all forms of female genital cutting (FGC), no matter how minor, have been illegal in Iceland since 2005, but no similar legislation exists for males.
“If we have laws banning circumcision for girls,” she said in an interview, then for consistency “we should do so for boys.” Consequently, the bill is not specific to male circumcision, but adapts the existing law banning FGC, changing “girls” to “children.”
There is much to unpack here. We first discuss self-determination and informed consent, before addressing claims about potential health benefits and harms. We then explore the religious significance of circumcision for some groups, and ask what implications this should have.
Read More »Should Iceland Ban Circumcision? A Legal and Ethical Analysis
